I’d like to design a mobile app for tracking and managing pain. Flareups and neurotoxic food sensitivities wouldn’t stand a chance. Touchscreens rock for radio buttons and simple data entry; just have to make it easy to pick what you need and dump it into a dashboard with different ways of viewing the data — historically, by symptom, by factor; graph, chart, etc.

Collecting and tracking your own data is key to surviving and thriving with a long-term condition. It is possible to make good use of gadgetry, though it’s not something I usually focus on.

“Beginning in 2000, Reuben, in his now-discredited research, attempted to convince orthopedic surgeons to shift from the first generation of nonsteroidal anti-inflammatory drugs (NSAIDs) to the newer, proprietary COX2 inhibitors, such as Vioxx, Celebrex, and Pfizer’s Bextra (valdecoxib). He claimed that using such drugs in combination with the Pfizer anticonvulsant Neurontin (gabapentin), and later Lyrica (pregabalin), prior to and during surgery could be effective in decreasing postoperative pain and reduce the use of addictive painkillers, such as morphine, during recovery. A 2007 editorial in Anesthesia & Analgesia stated that Reuben had been at the “forefront of redesigning pain management protocols” through his “carefully planned” and “meticulously documented” studies.”

More from the New York Times:“Doctor’s Pain Studies Were Fabricated, Hospital Says” http://www.nytimes.com/2009/03/11/health/research/11pain.html

It’s hard to convey the total horror of the event described here. This physician scientist, who ran the pain clinic at one of my old hospitals, published research that became the cornerstone of pain treatment in the US and abroad. After 13 years of successful, peer-review-published, desperately important work, he recently admitted the following:

• Not one single patient was ever enrolled in key studies.• There was absolutely no basis for the numbers he cited; he invented them.• He was paid a great deal of money to come up with certain results, and that is exactly what he did.

The most influential part of his career was a fraud.

The countless studies founded on his widely-publicized fictions are therefore meaningless, under the rules of scientific evidence itself.

The degree to which we depend on medical science to save us when we really need it — our helplessness at our times of greatest need — require us to have some faith in the processes that deliver our care. This isn’t just another massive fraud, it’s a devastating blow to the cornerstone of healing in the modern age. How can educated patients ever continue to believe that our doctors have anything of value to offer us? How can honest physicians bear to let this situation exist?

He could not have chosen a worse field to work in. In medicine, sooner or later, every field has to rely on pain medicine, and he has fouled the well from which the widest number of patients must drink. Scientific American got it wrong: Madoff was a piker, next to this.

The science of pain control and pain management has depended heavily on garbage cooked by a liar, served by intellectual catamites and eaten by the brainwashed. From there, it was inserted into me and mine, who were assured that this was the best that medical science had to offer.

Too bad there was no actual medical science involved.

…I apologize for the strong language. Can you think of more precise and telling terms to use instead? I’d be happy to change them, if anyone can come up with something better.

There are administrative questions such as, whatever happened to peer-review? Who the hell was looking at his notebooks and other physical evidence of scientific work? Why did it take 13 years for a “routine check” at Baystate to break his cover? What on earth were the most important science editors in the world thinking? How many of them are still employed — and why?

Those aren’t trivial, but they are not what looms largest in my mind. I think of Debbie, and me these past few years, and other friends I can’t name whose lives have been hopelessly distorted and sometimes horribly lost … because modern pain research has been built on one psychopath’s lies, which were funded and supported by a vast network of fellow liars, colluders, and the willfully blind.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

I’m intrigued by how much more capable the elderly are than we’ve been led to believe. Since only the luckiest and most sensible of us will even survive to be old, that makes a certain amount of sense.

CRPS, which typically attacks people in their “most productive” years (implicit assumption alert!), has shown us that many medications useful in CRPS, which have been given to the elderly like candy for decades (calcium channel blockers, antidepressants, benzodiazepines) have a serious effect on memory and cognition — which was documented only because we don’t expect 38-year-olds to suddenly lose their ability to track simple tasks.

But the elderly get no slack. If your whip-sharp grandad suddenly can’t remember your kid’s Little League scores, who’s willing to relate it to the meds he just started for his heart?

And who cares enough about grandpa’s brain to go to bat for him, and insist that the doc find another way to handle things? Hint: what you eat & what you do, do matter. Visits with nutritional consultants and PTs can be prescribed.

These wonderfully sensible scientists framed an exact goal: they “set out to investigate how implicitly held negative stereotypes about aging could influence memory performance in older adults.”

They specified “implicit” stereotypes, in other words, ones we’re not aware that we’re responding to. (The kind that patients and doctors hold about each other all the time.)

When the tests were run with the stereotypes laid in, the older people did worse on the memory tests. When the stereotypes were made irrelevant to the outcome, the elders did as well as the youngsters. On the same type of test.

Which should tell you just how pernicious and evil those assumptions we make about old people are. When grandma’s memory starts playing up, ask her if she has started any medicine recently. Find out what it was for and how else that can be addressed. Ask if it’s the smallest possible dose that’s prescribed.

Give up the idea that pills solve problems freely, and recognize that each one imposes a tax on the body and brain.

If grandpa doesn’t mind losing his mind but won’t give up his risotto and vichyssoise, maybe the pills are fine, but if he simply assumes the doctor is offering the best deal without showing him alternatives, maybe it’s time to talk about alternatives.

Because doctors default to doing what’s easy and predictable — just like the rest of us! That’s not always what’s best for a mentally or physically active person. They seem to deal with a lot of lazy idiots, and if you or your elders are neither, it takes a lot of effort to bust them out of their groove and get them to think things through.

Try taking it seriously, because nobody should be forced to lose their mind before they lose their pulse.

“…The researchers suggest that the strange defensive behavior exhibited by the enzyme-deficient mice may actually reflect a limited range of adaptive responses and lack of emotional flexibility — the mice may only have one gear for fear.”

We’ve all known people who make exaggerated choices around danger that make no sense to ourselves. (Having heard my mother and my sometime partner on the subject of my riding motorcycles, I’m pretty sure of that.) However, only at my most desperately depressed have I engaged in unsafe sex, which is the second stupidest risk I can think of (the first having nothing to do with motorcycles.)

The role of MAO-A and depressive neurotransmitters, combined with the dopamine-deficient sense of hopelessness and diminished executive function, make that make sense:

“Monoamine oxidase A is the main enzyme in the brain that breaks down serotonin, norepinephrine and dopamine…”

Which makes me think that it’s possible, in humans in vivo, to be deficient in both MAO-A and in dopamine, serotonin, etc. It would explain a lot about certain mental states, even though it seems chemically tautological at first glance to be both Big 3-deficient and MAO-A deficient. As I’ve learned, though, deficiency and dysregulation do have additive effects, they don’t cancel each other out.

I’d like to see more studies which monitor serum and brain levels of these key chemicals together, preferably in humans. Science tends to take the simplest possible approach, which is rarely the most realistic and not necessarily the most telling. It does get funded and it does make it simpler to design the studies.

I look forward to having more sophisticated thinkers (and funders) get into this branch of psychoneurology, since all these lively lovely tiny bits of info won’t come together in a meaningful way until we can look at them in concert with a higher degree of exactitude and completeness. I suppose I’ll have to be patient. And careful.

For a change, I’m going to ignore the disingenuous and smug language putting inappropriate blame on the patient, because there’s so much basic information missing.

As anyone who has been homeless or worked with the homeless knows, indigence involves the following facts of life:

– Assuming you can even get to treatment sites …– Doctors won’t take you. – Hospitals don’t want you. – Clinics can rarely fit you in. – Pharmacies hate to see you — a gaping well of need — coming through the door.

And that’s just the medical side. In regular life,

– There’s no decent surface to lie down on. – There’s rarely a good way to get clean. – The concept of “good food” is irrelevant. You have to eat what you can get, regardless of whether it triggers a flare or messes with your brain, and are expected to be grateful. – If you’re a woman or a kid alone, you’re going to wake up with some guy on top of you. This is very bad for back and hip pain, among other things.

Facts you should know:

– Being homeless is a perfect recipe for mental ill-health. – Disabled people are over 10x more likely to be homeless than their equally-educated & -skilled cohorts. – Chronic pain is part of most disabling conditions. – Because of the economy, and despite the masses of money floating around in the stratosphere, disability and indigence are hitting historic highs.

Clinical take-aways:

– Take note of the link on the right to contact your political representatives. Let them know how you’d like the situation to change. – ALWAYS ask indigents about pain: what, where, when, exacerbates, what they do about it, & most importantly, what they’d like to be able to do about it. Answers to the last will surprise you, because most of these people aren’t stupid. (Just weird.)– Provide freebies, including toothbrushes and emesis basins. What they can’t use, they can barter with. – When prescribing, be as generous with free samples as your drug reps’ handoffs permit. Your insured patients only need enough to get started; your impoverished patients need to get so used to feeling better that they’ll prioritize accordingly (beg, borrow & steal for their scrip instead of their booze? It happens.)

Keep in mind that a few days’ relief is just a break, but a few weeks’ relief lets them start to function for a change. Some will abuse your kindness, but big deal.

The rest will take the opportunity of having their burden lifted a little, to move forward in a way they couldn’t do before. And thus a good deed goes onward, invisible to you but not to those ahead.

Make it a habit. Eventually, you’ll see it come back to you. The feeling when it does is indescribable.

The obvious scatological humor will be left alone. Guys, you know what I mean. (Girls who were outnumbered by your brothers, you too.)

I started to blog this article because the forehead-smacking tone of the revelation that the gut might relate to the brain was a bit too much for me. On closer examination, it looks like the misplaced drama is the writer’s, not the scientists’.

One of the places where serotonin is released is in the gut, where it helps digest proteins. That’s the most obvious “duh” moment here. Moreover, as those of us who remember our embryology know, the inter-relationships and constant correspondence between neurology and gut, gut and immunity, immunity and endocrine system, endocrine and neurological system are all too intense and interlocked for words.

Most studies make brutally clear that these so-called systems are medically treated as separate and distinct, but our bodies never got that memo. It’s all the same system, as far as the body is concerned.

Much of this researcher’s recent work focuses on neurology of the gut — enteric neurology. It’s a real thing now. His prior work focused on the biological environment in the gut, or the intestinal microbiota.

// START Word geek goes wild:Sometimes, I just love medical terminology for the way it rolls, hops, and bounces off the tongue. Enteric neurology. Intestinal microbiota. Hypothalamic-pituitary-adrenal axis.

Maybe that last one doesn’t work so well.// END Word geeking.

If you can stand the medical and chemical jargon, it’s worth looking into some of his work. It’s probably not a stretch to call it prescient, in that it is likely to lay the foundations for our emerging understanding of the gut as a more complex and self-managing, yet interlocked, set of systems than we’ve ever imagined before.

I can’t find the original science article, just this unsatisfactory and superficial overview. It says that intestinal microbiota affect the person’s mood and feelings, and that it’s possible to deliver specific probiotics (like yogurt species, naturally-fermented cole slaw, certain cheeses and the like) in order to have a specific benefit to the neurological system.

If you were an empiricist, like me, it would sound like “eating good, living food leads to better mental health,” which healers have been saying for millenia. But far be it from me to steal such well-researched thunder.

Wikipedia’s digest (sic) of the enteric nervous system (this seems basically congruent with the uber-geeky medical studies I looked at on the subject, so I accept it as a decent primer):Enteric Nervous System

Couldn’t find a good overview that didn’t involve more dead rodents than I could, er, stomach.

If it weren’t for the inane babble puzzling over why Hemingway lived so intensely, this line would be the Winner of The Most Fatuous Statement award:

“…in January 1961 he told his wife, Mary, that he could no longer write a single good sentence. And Hemingway would only settle for great ones.”

It wasn’t a question of settling for less than great, it was a question of how important it is to fulfill your purpose and dig some meaning out of life, even amid the unbearable. That purpose and meaning was taken from him, under the mistaken guise of treatment.

Hemingway got electroshock therapy for his depression; a common side effect is to knock out your language abilities and cognition, sometimes for months and sometimes forever. The one thing that made his life endurable — writing like himself — was taken from him.

Depressed people have more courage and determination than their non-depressed cohorts. Studies are finally being funded that verify this (which I’ll dig up later. Feel free to nudge me with a comment.)

Think about that next time you curl your lip over suicide. It’s not about courage. It’s about unbearable pain and a degree of mental crippling that puts a valid life out of reach.

Waiting and working at it until things improve is a reasonable thing to do: Hemingway waited and worked at it for 40 years, though with so little real hope for treatment. Talk about courage! It’s unthinkable how much courage he brought to bear on his life. His intensity and wild behavior were directly related to making his life bearable — and his work more compelling. Check his quoted remarks on that subject. What’s between the lines is breathtaking.

The article’s remark about suicidal lineage is true, but poorly understood. A suicide in the family has the powerful effect of making suicide less unthinkable. There is often a genetic tweak associated with it, but that’s not all there is. The thing to know now is, we are not our predecessors; we can do more. Far more.

Hemingway died before we developed SSRIs, SNRIs, and a tremendously improved understanding of neurochemistry, behavior, nutrition and psychodynamics. We have more options now. Lots more. Waiting and working at it is a real success path now.

Be good to your depressed friends. You probably have no idea what they’re capable of, when they can be well again. Help them persist.

It’s the most important thing to do: persist. A valid and bearable life is a reasonable thing to hold out for. Only death bars the door to healing. Things will change.

Most people get confused when faced with an article about medicine, or any kind of complex science. Because people with extremely expensive educations wrote that stuff, then other people figure (at some level below common sense) that the study’s authors must be fundamentally superior.

Education is not the same as intelligence. Intelligence is not the same as sense. Sense is not the same as integrity.

I come from a highly educated family. (‘Nuff said.) Growing up in the context of good education really made it clear that people are people, regardless of the letters after their names. Degrees simply mean that someone can work hard on their own behalf; they’re no guarantee of logic or brilliance. It’s never wise to subvert common sense in favor of education.

So, if you’re one of the majority who doesn’t have alphabet soup after your name, give yourself some credit as you read these things.

There are a few simple principles that can help you dissect a study with reasonable confidence:

Question assumptions (& listen to your eyebrows.)

When the question makes no sense, you don’t have to accept the answer.

If it seems stupid, it probably is.

Don’t ignore the man behind the curtain.

A Furry Example of Fuzzy LogicThe article cited below is precious … A delicious exercise in mental pretzel-ry designed to reduce the average brain to cottage cheese. It’s easy to unravel if you hang onto your common sense and don’t let go, because your brain is not average. Ready? Here it is.

The title of the article linked below proclaims that researchers have proven that Topic A is bogus.

The researchers’ summary says no such thing. It states that they’ve proven that your belief in Topic A should be much greater if you do believe in it or much less if you don’t; doesn’t matter which.

Then the researchers state that that finding, itself, doesn’t matter, because they personally don’t believe in Topic A, can’t think of anything in its favor, and that you should agree with them — regardless of their own findings — simply because they said so. (A fairly common conclusion.)

Let’s pause to regroup, since this is enough to make most people tear their hair and gnaw the furniture. That tends to kill the punchline.

You’ve already thought of ideas that support this and ideas that don’t, and you probably already know whether you, personally, would like having a ferret as a pet.

Have you ever, in your most random moments, picked a percentage or a ratio to indicate how much you would, or wouldn’t, like to have a ferret as a pet, with nothing to compare it to? I mean, is there any value to the idea of doing so? How odd is it to assume that people would?

TIP: Question assumptions. If your brain — or the skin on your forehead — starts to squirm, it’s a good clue that there’s an unexamined assumption waiting to jump up and trip you. Stop and check.

Liking pet ferrets is simple: you either like them (a little or a lot), you don’t like them (a little or a lot), or you decide you don’t know enough to have an opinion. That last option isn’t even available here, but it’s very common.

If you have an opinion about ferrets as pets, doesn’t its extent depend on external forces — whether you’ve known pet ferrets, whether their owners were responsible, whether it was a nice ferret or a real brat?

And wouldn’t the appeal of keeping/getting rid of a pet ferret depend on whether there’s a pet store stocking ferrets and ferret supplies, what your lease says about pets, whether or not your housemate can ferret-sit while you’re hiking the Camino de Santiago, whether your veterinarian can help you surrender an unwanted ferret? And don’t these circumstances themselves change, from place to place and time to time?

So how can you assign an absolute percentage to your opinion about whether ferrets make good pets? How surprised would you be if anyone asked you to do so?

And, really… Why would you? Do you assign a percentage to how much you dis/like strawberries, the color blue, or Sarah Palin? Or don’t you use value words instead — love, like, can’t stand?

Unless most (rather than very few) of you think of your preferences in numeric terms, then the very question the researchers are trying to answer is fantastical. Pure silliness.

TIP: You don’t have to accept an answer, if the question itself makes no sense.

Moreover, the way they processed the data doesn’t change your answer; it indicates that your beliefs should be far stronger, whatever they are.

They’re saying that, if you would like a ferret as a pet, you should be on your knees at the pet shop, weeping with longing — or, if you already have one, should be emitting a constant stream of happy little noises as you snuggle your ferret at work, on the bus, everywhere, all the time.

If you would not like a pet ferret, you should be packing to move so you can stay as far away as possible from anything long and furry or even vaguely ferretlike — or just blow up all the ferret-friendly pet shops where you live.

TIP: Just because someone with a very expensive education says it, doesn’t necessarily make it so. If it seems stupid, it probably still is.

Contrary to the title of the article, the results tell you: don’t change your position, just become more extreme about it. That’s their conclusion.

Isn’t that helpful? Just what we need: debates that are even more shrill, spittle-flecked and unreasoning.

TIP: Repeat prior tip… Really stupid. In light of the decisions that led up to this conclusion and the anti-intellectual nature of the outcome, do you think this makes sense?

And, clearly following their own advice, the scientists themselves pick a side and pronounce that they don’t like pet ferrets and that you shouldn’t like them either.

Why?

Because they don’t understand how anyone could like pet ferrets and BTW other scientists in vaguely pertinent fields don’t know enough to prove how pet ferrets can possibly be desirable.

Therefore (stretching the metaphor), given this massive ignorance on the part of so many highly-educated people, ferrets are obviously terrible pets and all of them should be gassed.

…WHAT??…

SUMMARY:

This is not a terrible study and it was not done by stupid people. They just left their mental integrity in their other jeans, and that happens a lot.

Why on earth…? Because we all have assumptions and agendas.

Science aims to clear that out, but it’s done by live humans with organs and mortgages, so their objectivity is pretty hit-and-miss.

When reading science articles, be open to hidden agendas while you look for the facts. For better or worse, they go together. You might as well notice both.

Scientists are often very obvious about using big words to say silly things, and if you can step aside from feeling intimidated, it’s surprising how obvious they are.

The problems here are common problems:

Point 1. Article’s title misrepresents the outcome of the study.I usually read an article at least twice before making up my mind. I read it through, then start again at the title. How accurate is it? If the title isn’t fairly accurate, I know someone’s got an intrusive agenda.

Point 2. Outcome doesn’t make sense. It says you should believe either more than you do, or less than you do, but it doesn’t matter which. How to do so is not mentioned (for good reason.)I usually look over the details of an article three or four times, to give the facts time to sift together in my mind. When I feel my brow wiggling at something, I stop and look again. I trust my good sense more than I trust my education. Figuring out crappy data just requires you to assume you’re not an idiot, even if you don’t know the field. Don’t think badly of the scientists, just assume they have their own sets of human flaws. It’s a safe assumption!

Point 3. Conclusion goes against the findings.In any case, DON’T believe in Topic A, because the researchers have made up their minds on the basis of their ignorance, and screw their data anyway. Continue to assume you’re not an idiot, as you read the conclusion. It’s that simple. Then compare it, again, to the title and to the facts. If something doesn’t add up, you know there’s agenda going on.

These particular scientists intended to prove that their statistical method was better than existing methods. Given all the logical problems surrounding their efforts, I think they blew it, but I’m not a statistician. CLUE:The topic of this study was ESP.

As my relentlessly rational, very prescient Dad once said when I asked him whether his use of ESP was irrational, “It would be irrational to ignore the evidence of my own experience. It’s highly consistent for me, even though most people can’t do it, or can’t do it very well. But just because they can’t use this valuable tool, does that mean I shouldn’t? That wouldn’t be very clever!”

Dad was very clever. (…And for the record, he did foresee his own end.)

Let’s step over to another, less-emotional metaphor to think about studying this subject. Imagine that most people are basically color blind, but a few can see some color. Anyone who can see beyond the greyscale is not going to get much credit, but there are enough of them to make the rest wonder.

However, since the colorblind are looking for proof of color with instruments that see only luminance, but cannot see color even as tone or hue, they probably won’t have much luck proving something that they don’t understand, can’t use, and don’t believe in anyway. (…But they can sure get snarky, trying.)

TIP: Don’t ignore the man behind the curtain. Think for yourself … And try to remember, especially if you’re in a position of respect, that you don’t necessarily have the right to think for others.

Today’s unbelievably fatuous truism, which everyone always forgets anyway: Other people are not you. Only you are. Honor that, and things go better.

THE POINT IS:In the end, everyone has to pursue their own logic, account for their own experiences, and come to their own conclusions.

What science is supposed to offer is a crystalline view of measurable and provable data. It doesn’t help if the scientists pick up a hammer and smash the crystal when presenting it to public view.

As I know all too well, education is not the same as intelligence; intelligence is not the same as sense; sense is not the same as integrity.

Read studies for yourself. Practice makes perfect: the more you do it, the easier it gets, and the more accurate (and potentially shocking!) your understanding becomes.

Jump in here and comment on your own experiences. I’d love to hear from you about your adventures with this.

Mitochondria (from the Greek, meaning “string grain” — yeah, it’s lame, but it sounds good in Greek) are independent little one-celled organisms that live inside your cells and make energy for them. If you ever studied the ATP cycle (also called the Krebbs cycle or the citric acid cycle, depending on where you went to school and how deeply they went into it), then you should know that this is where the ATP cycle takes place.

Without mitochondria, you have no way of converting food into energy.

When you were being conceived, half your cells’ genes came from your mother and half from your father. All of the other stuff that goes inside a cell came from your mother. This includes the mitochondria. (This is why mitochondrial DNA is used to track maternal inheritance: it always comes down the female line.) Your mother’s cell hosts conception, just as (normally) your mother’s body hosts gestation.

Mitochondria have a fairly smooth outer layer and a deeply-rumpled inner layer. Most of the action happens inside the rumpled layer. This is where the ribosomes, most of the fluids and loose protein, and the ATP-making particles hang out.

Cells, including mitochondria, need various proteins to do their work with. Large proteins get carefully handed from the outside world, through the outer layer of the mitochondrion (singular of “mitochondria” — sorry, it’s still Greek), then into the inner layer.

If the smooth outer layer is damaged, this makes this transfer process screw up, and the inner layer gets disrupted, ripping up the cell. Granules and nucleic acids all over the place. Bang goes that ATP production.

Knowing why it’s so damnably exhausting to walk a mile, when it used to be fun — fun! — to run 3, is a bit of a relief. First question that leaps to my mind: How do I fix ’em? How do I give them what they need to get better and protect themselves? The answer seems simple: antioxidants are what’s needed to prevent and repair that damage (good explanation of that here) to the walls of the mitochondrial cell. Mitochondria are both the biggest makers of reactive oxygen species and the biggest scavengers of them, so of course it makes sense that that’s exactly the kind of help they need when they can’t keep up.

Downing antioxidants by the bucketful is one way to get them in. Intriguing for three reasons:

Kind of depressing for one simple reason: it’s iffy whether, once you’ve got the disease process going, the antioxidants can get where they’re needed and save your poor beleaguered mitochondria. … Having said that, I notice that the writers of that article seem to be trying to sell something, and that makes me very suspicious of their conclusions.

Next, I’ll offer suggestions for patients, suggestions for clinicians, and then wind this up with a foray into the question of whether mitochondrial issues have a genetic component, like being X-linked — the way a cat’s fur color is!

For people with CRPS — So what is a poor, confused CRPSer to do?

Two things that you hardly need reminding of:

Trust your sense of your own body.

Do what works for you.

Most antioxidants are not going to hurt you, without letting you know first (that is, make you nauseous or feel funny.) Take vitamin C in doses no larger than 500mg, since larger doses tend to trigger your gut to throw the C away. Go ahead and try stress-vitamins, co-enzyme Q-10, N-acetylcysteine, hair-skin-&-nails vitamins (these are really fat-soluble antioxidants) … try things, take what helps, and put aside the rest if they don’t do anything. Keep in mind that things change: what doesn’t work now might work later, and vice-versa.

For antioxidant powerhouses, look for dark-red and dark-blue fruits: pomegranates, blueberries, red wine, chocolate (though some CRPS people have to avoid that for its nerve effects), mangosteen (my favorite fruit), cranberries, and so on.

Stay smart. Stay loose. Keep going.

For medical people — clinical takeaways:

Most treatment standards, particularly for CRPS, are based on science that’s over a decade old. They shouldn’t be changed blithely but they can certainly be improved. There is plenty of room for that.

The following points are intended as additions to the standards you follow for CRPS, as they are good guidelines for mitochondrial and neurologic support in a system compromised by CRPS.

After any limb surgery, give Vitamin C 500 mg, QD or BID, for a couple weeks beforehand and 30-50 days after — or to metabolic tolerance, if that’s too much. Use a food-associated form for best uptake. This one intervention will reduce the risk of developing CRPS by 80%, according to the best current data.

We assume your patients are taking an adequate multivitamin and are eating plenty of greens, dark fruits, and wholesome proteins. So make sure they are. Direct them to food bank, food stamps or other food assistance as needed. Give recipes. (No kidding.) 2 benefits: better antioxidant uptake if taken with antioxidant-rich food, and increasing the patient’s own sense of agency/participation improves pain and affect. (If you don’t believe in multivitamins, then get out of the supermarket/pharmacy and get some real ones.)

Give “uber-antioxidants” like ubiquinone (co-Q 10), N-acetylcysteine, or glutathione. There are indications that these can provide substantial benefit — though again, not normally curative of chronic CRPS. They are impressive, especially for mitochondrial-dysfunction issues.

These ranges are empirical; if you can find the funding to do the science to develop more reliable ranges for this population, so much the better.

Adequate tissue oxygenation and perfusion can return substantial function and significantly reduce pharmacologic burden. Patients can demonstrate this, even where the data have not been published and peer reviewed. Therefore, use antioxidants rigorously and intelligently.

Why all that anti-oxidation when the medical literature is not definitive? 2 reasons, which you ought to know for yourselves:

Between the cortisol and systemic oxidative stresses, it can’t hurt and it will help something. You’ll see a distinct improvement in affect, activity, motivation and well-being when the dose is optimized, even if it can’t be expected to be curative. Making your patient’s life more bearable is an essential part of your job.

Let’s say this together, everyone: statistics mean nothing in the case of the individual. Accepted, standardized medicine is what you start with, but, when your case is taking you out to the margins, you go to the margins, because that’s where your success is most likely to await.

Keep in mind that doctors are not the only scientists interested in the human body. Be prepared to look into other disciplines for leads when your own offers no good options.

The accepted style is very different, but the info they have is tremendous.

Forward-looking thoughts:

Consider infusing vitamin K into CRPS-damaged tissues. I would love to see studies on that.

Figure out how to deliver antioxidants in a targeted way. (Now! Please!) This would be a good way to save a lot of lives and end tons of misery.

… And for all curious people …

Let’s go back to mitochondria in reproduction. Kind of in an X-rated way, figuratively speaking.

We know that women have two X chromosomes. The Y chromosome is a stubby little object with hardly any data to use, unless you’re into color-blindness or hemophilia; this means women have quantities of extra data, which can have even more devastating effects (as in, Down syndrome.) So how to handle the extra genes?

Pick one. Simple as that.

Shortly after conception, when the cells are just dividing like mad and haven’t decided what to be yet, every single cell turns off one of its two X chromosomes; each of that cell’s daughter cells inactivates the same X chromosome. As the cells continue to multiply, then fill out, fold, bend around, and specialize, to become a whole, separate being, it means that X-linked traits appear in a mottled pattern throughout the body, as the two sets of daughter cells continue reproducing and passing on their particular X-activations. Isn’t that curious?

As an especially decorative instance, cats’ hair color is an X-linked trait:

Cool, huh? Love her accent, too.

But this fact brings me to a serious question about mitochondrial disease. If mitochondria are sex-linked, is there a relationship between the X chromosome and mitochondrial expression? It seems improbable that there wouldn’t be, because mitochondria reside inside the cell, and the cell’s action is determined by the genes within it. The mitochondria had to have developed a special relationship with the X’s in the 23rd chromosomal pair, after all those millenia.

It’s generally accepted that mitochondrial diseases are due to toxification or to complex, multigenetic issues. Ok, fine. But what about mitochondrial vulnerabilities that don’t become pathologic until they are damaged in some other way? To what degree is toxification an issue related to X-activation? In other words, is mitochnodrial vulnerability related to vulnerabilities in the active X chromosome?

Is there a patchy characteristic to the early stages of mitochondrial destruction? — You know, the early stages of rare disorders, the time when it’s impossible to get a diagnosis because the doctors are all so busy chasing their own tails around your irrational symptoms and their own ignorance.

Is that initial “mottled” activity one reason why these diseases are so damn weird?